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Kim123

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Saw third neuromuscular doctor last Monday. He's in agreement that some clinical assessment point towards als but doesn't think another emg is going to show anything different right now. Suggests to wait as symptoms evolve Increased gabapentin dose for so much pain that I'm in. Not sure how to take all of this no help no formal diagnosis no directions . Can hardly walk legs are so stiff and painful last few days. Any suggestions would be greatly appreciated
 

Nikki J

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If these people have not been ALS specialists in a University level ALS clinic go see one. However sometimes in neurology it really is wait and see. Unfortunately. If you need pain management then pursue that
 

Clearwater AL

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If you can... post the Summary/Conclusion of your last EMG.

Three neuromuscular doctors and none want to confirm ALS is
a whole lot in your favor it is not ALS.

Considerable pain also points away from ALS.

What (where) neuromuscular doctors are you seeing?

Hope for something treatable and curable.
 

Bestfriends14

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Hi Kim,

You have yet to post an EMG report. May I ask why? It will most certainly help the folks here to help you with any advice we can give. If you could please post the EMG summary/conclusion part, we can guide you best from that point. Pain can come in the form of cramping early in the disease, but it comes with clinical weakness (verified by an ALS specialist), and function failure. It does not come on its own for months and months and months with no progression. Again, the EMG can explain this and can help the folks here aid you.
 

Kim123

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Moderate pain in my lower back that started last fall . Left back of leg quad area behind knee and lower side of my leg pain started around end of Jan. Also had been having headaches for months that's when mri of brain was done in Jan ordered by my family doctor.. Showing chronic micro vessle and mild myelin changes. Pain in left leg and back continued but was tolerable. Pain continued to get worse , feel tight in the muscles twitching of outside lower leg muscle. And each day symptoms continued and some cramping of muscles. Also nocturnal numbness of leftEmg and full rheumatologic blood work up was ordered by first neuromuscular dr at Cleveland clinic in March when I saw him for my complaints. April had emg done and talked to him on phone about results. Just lumbar problem. Went back 2nd NM Dr at Cleveland clinic for second opinion. because pain and twitching increased he referred back to emg saying u have hypereflexies. Hoffman's sign etc. No answers. Symptoms continues 3rd at Cleveland clinic seen last Monday keep also referring back to emg but does agree some clinical signs of als. Some spacisity walk then getting limpy. Have to wait to evolve more. My right sided extremities are now getting just like the left. Each day is worse then the day before. More pain that does feel like cramping This is quickly progressing. Ortho dr did mri of lower spine said changes are mild. Nothing to explain my complaints. Sorry for going on and on just feel really alone and don't know what to do. All immune, inflammatory rheumatic ortho etc ruled out. Als. Any info would be greatly appreciated. Thank you
 

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Nikki J

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I would go to another institution. All your opinions were from the same place I think? Getting a different perspective might be helpful.

that said I am not a neurologist but your emg as you know just doesn’t show ALS and hyperreflexia plus Hoffman’s especially is bilateral are not specific to ALS. And all the pain sounds like something else. I understand it is frustrating not to have answers but there are times they are not to be had.
 

Bestfriends14

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Kim,

You said you were officially diagnosed with clinical ALS. What happened with that diagnosis? Do you have the diagnosis letter? I would like to know who gave you this diagnosis as an ethical neurologist will absolutely not say you show signs of ALS without the proper diagnostic steps to back up their words. By the looks of the report you posted, the diagnosis is a lumbar issue. With your symptoms, that correlates more with a lumbar issue and not ALS. Not even close to ALS. Your thread confuses me.
 
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Clearwater AL

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At the very top it says... "Nerve Conduction Study" ?? The EMG report with
Summary/Conclusion at the bottom of the the last page would greatly help
our very ALS knowledgeable members answer any of your future posts.
 
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